My son Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Every morning he packs his lunch and sets it in his backpack by the door. He does not understand the concepts of shelter in place, stay at home or quarantine. Nick just wants to be out in the world, go to his adult day program, eat at Taco Bell, and go to the Showplace Movie Theatre with his respite worker. But COVID-19 has taken this away from him. So, how are we managing to stay afloat during this lockdown?
I am looking at this COVID-19 crisis like a storm. Each family has a vessel that they are sailing through uncharted waters. The first week we found the seas to be fairly smooth. Nick worked on a lot of functional independent living skills around the house. I posted videos of him vacuuming, unloading the dishwasher, and helping with the laundry. My blogs were packed with helpful advice for parents, because after all, I am a DS-ASD writer and consultant. It did not seem too rough in the beginning.
But as the weeks continue to drag on, our vessel has been tossed around a lot. There are only so many times that Nick will watch the continuous loop of “Thomas the Tank Engine” season 2 (he likes the old school episodes). After a while he gets bored or frustrated and because of his language deficits, he expresses it through his behaviors. That is when random objects go airborne, and he experiences severe meltdowns. Perhaps this is his way of giving this stay at home order the finger.
This COVID-19 crisis has been draining on everyone and like nothing we have ever experienced. But there are a few things that have helped us better navigate these rough waters. I must remind myself to push my chair back from the laptop and respect Nick’s feelings. When he pushes the pudding cup icon on his AAC device, I must honor that he is using his voice. Getting outside helps; Nick has been taking long walks with his Dad and we hung his old therapy swing on a tree in the backyard. He has also been enjoying the hot tub. All of these provide Nick with a sense of calm. He continues to help around the house with chores and receives praise for his efforts.
Navigating DS-ASD during COVID-19 has been difficult. What I am re-learning are the lessons I have written in my book, “A New Course: A Mother’s Journey Navigating Down Syndrome and Autism.” Patience is what keeps your vessel sailing on an even keel. Take this crisis one day at a time, and in the challenging moments — one hour at a time. In the difficult hours, I remind myself to breathe, stay in the moment, and be kind to myself because we all are doing the best we can to navigate this unbelievable time we are in.
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